Welcome

Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: And the hits just keep coming... (Read 37979 times)

I guess I am needing some support or advice about now. It just seems like the hits keep coming in my life. Let me tell the story....Back around Easter, I had severe stomach cramps and vomiting. I chalked it up to food poisoning after looking over at WebMd and talking to a nurse here at the hospital. But after the stomach pains were over I noticed that I had two lumps on the side of my stomach. I decided I would mention it to my primary doctor when I saw him which was just on the 14th. He wanted me to get a abdominal cat scan done which I had just got done this past Monday. The results are back...

It seems that I have a legion on my liver, I guess that explains the elevated liver results. I also have a cyst on my left lung. Now in my mind, I am thinking my meds are the culprit. I have been on them since last September. I have made up my mind that I am going to stop them until I find out what's going on. I am waiting to get appointments with two specialists. I am in utter shock because it isn't like I abuse my body. But I am concerned because my mother did pass from cancer even though my primary doctor is telling me NOT to worry, I just can't help but worry. Now I seeing they are going to have to cut on me and this concerns me being poz and diabetic.

I am trying not to think the worse but maybe I should get my will in order.

Queen, please don't stop your meds, it's unlikely they're the culprit so soon after starting. You're a smart cookie, you know you need to sit down and discuss the test results with your doctor before you decide to do anything.

I agree with Doxie. I'd definitely NOT immediately draw the conclusion that HIV meds caused this. This issue could easily pre-date your starting meds and you just weren't aware of it, or be purely coincidental.

Miss QueenSorry to see you are being hit with more "stuff". It sucks. But there is time to relax and be good to yourself. This is what Betty means when she says "day at a time". See, they aint cutting you today ...and not tomorrow. So you got time to relax and figure this thing out. Perhaps there will never be any incision...such a nicer word than CUT.

Sorry to hear of this report. Whenever someone I care about is facing a similar situation I always tell them not to jump to conclusions. Wait and see what the specialists have to say and what additional tests show. We will all hope for the best.

Thinking of you,Woods

Logged

"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

Thanks Guys. I am waiting to hear back from my ID doc. I am sure he is going to say he doesn't want me to stop the meds either. Nurse Leah seemed to be concerned for my mental health but I assured her I am not suicidal and I'm not. I am just in shock and wondering how am I going to deal with it all.

I sure hate to hear this report. Sweetie, you need to lean on your friends, and on us here....we're here for you. I won't say "don't hit the panic button" because I am like you, I would probably have already mashed it.

I agree with the other folks, I'm not sure stopping your HIV meds is the right thing to do. Just hang on honey, you are a strong person, and you will get through this 'crisis', or whatever it turns out to be.

love you much,

Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Queen-I am so sorry all this crap has been thrown at you. I agree, that you should definately keep taking your meds, you don't want to mess up your numbers. Talk to all the docs and make the decisions with them .Stay strong!Love,Snow

I just wanted to add my name to the list of people who are concerned about you. Stopping your meds suddenly doesn't really seem like the best idea to me but it's understandable to want to have something to blame this on. As everyone has already said take a deep breath and really pause for thought. Talk with all your doctors to make sure everyone is on the same page. Remember we are all here thinking about you.

All the best!AA

Logged

It is not the arrival that matters. It is the journey along the way. -- Michel Montaigne

Sorry you got that bad news.It's already been said here, but I'll put in my 2 cents anyway:Learn about the lesion. Learn about the cyst. Don't stop your meds unless you have some real evidence that meds are the cause.Best,Mark

Hi Queenie - you don't deserve this - no one does - your "family" supports you in every way and we are all hoping for you to get better.Don't blame it on the meds - keep taking them - they are important to the rest of you.

"The Bible contains 6 admonishments to homosexuals and 362 admonishments to heterosexuals. That doesn`t mean that God doesn`t love heterosexuals. It`s just that they need more supervision." -- Lynn Lavne

Queen, I'm so sorry to hear about this. (and don't know how I missed it yesterday...)

As so many others have said, please try to not panic and please don't stop your meds! They're unlikely to be the cause. Hopefully this will turn out to be nothing serious - I've got everything crossed for you and will be keeping you in my thoughts.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Thanks Again Everyone. I really do need all of your support. I feel like I am falling apart and I am no long in this world. Not that I want to kill myself but that my body is starting to give out. My emotions are getting the best of me and I have been everything from angry to tears. I hate that shit because I pride myself on being logical and some what emotionless. I guess it's the Trekkie in me, while everyone was wet for Captain Kirk, it was Spock for me...Must've been the ears and those eyebrows... I didn't take my meds last night, I just didn't want to but you guys made some good and logical points so I will take them tonight, I promise. I still haven't heard back from the nurse with the appointment dates to the specialists. I'll give them til about 1 or so then I will call and find out myself. I am still trying to wrap my head around it all but then I am so tired of asking why. I have done it when I lost my hearing, became poz, and now this. I am to the point of why ask why but I insist that I am angry and my anger is directed at my God/dess.

Jan--- Well, if YOU say it then it is official. I rule the forums, Peter and Tim just do all the dirty work... Funny, you mentioned Queen Victoria, that was my mother's name.

Ann-- Also funny you mentioned that Queen Victoria partook of the good green. So did my mother, she smoked her first joint when she was 29 and pregnant with me. So my habit is hereditary, I knew it and I am sticking with that story..

Hermie-- So good to hear from you. I like that avy too. Wishes I could be there to toke some of the green you got over there.

Aunty D--- I love you beyond words. I love that Poak Chop video too. I think I am going to learn that dance and when I get past this, that will be my celebration dance and song...

I love you all and I thank you for your support. Please keep sending the good vibes because I am running on E about now and I will draw my strength from you all. I will continue to keep you updated with my emotions and with the specialists. I have been through a lot in my little 39 years but this is the hardest fight I have had to take on and believe me I am not going out without a fight. I am ghetto, thuggish, logical, strong but most of all I am a Queen. Love ya's...

I think it's perfectly normal to want to stop everything (treatments etc.) when there's a possible looming malady. But, you don't want things to get much worse and spiral out of control.

Your anger is validated. When my 1st husband died, a therapist asked me if I was angry at God. I said "I can't be. I might get struck by lightening or something." He replied "Don't you think God is big enough to handle your anger?" So, I allowed myself the anger.

I hope you're getting some answers. We're still here for ya, and waiting on the news. Luv,Betty

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

No news yet, I called my primary doctor's office and spoke with the nurse. The one specialist was closed yesterday and the other one never got back with her...So she says she will call them back today and let me know. I still have not heard back from my clinic nurse with what my ID doc is wanting me to do. Maybe it's just me but it seems like everyone is just sitting on their asses. I know it's only been a day but hey, I want to just get all this over with.

EDITED: My appointments with the specialists---one is one April 30th and the other is on May 12th.

First, I will stick with the original topic and mention that I have been doing some research on biopsies. From what I have found out when one has a cyst on a lung it is likely a pocket of air on the lung. I am hoping this is the case with me. As for the liver, well that was a bit more complicated and not sure if I was comprehending totally what I was reading. But it sounds like to me that if it a biopsy of the liver than they are looking to see if it is cancer or few other things. What I am not thrilled about is a needle going through a tube and them sucking a piece of lung or liver out. I know it must be done but I am scared of needles, it took me a long time to just get use to getting my blood drawn or shots. I use to get light headed. I know, go figure with all the horror movies I love to watch. What I am hoping is that I can be put to sleep for these procedures. In the case of the lung biopsy, if I move or anything, it can lead to a punctured lung. I jump when I get blood drawn, ok. I want to be put to sleep. My sister suggested that since they may have to do biopsies for both that the doctors do them both on the same day to make for less trauma to my body. I am going to suggest this to both specialists.

Now since the title of this thread is the hits keep coming, I feel I can add this new event here too. My youngest son went to jail yesterday. He is only 17 yrs old. He has 11 charges against him including attempted homicide and 7 counts of reckless endangerment. If you want the details, peep in the Women's Dating thread, I posted the local news article there from today's paper. It made the local tv news yesterday. He called me a few times today. I am trying not to stress too much about it because at this point, I really feel I can't afford to. All I can do is vent which what I have been trying to do. How much more am I suppose to take? I seriously feel like I am at my breaking point but something just keeps pushing me on. Maybe it is my guardian angels...

I think all the prayers and good vibes must be affecting me. I woke up today feeling rather calm about things. I guess I am accepting things and will just go from there. Not like I have much choice in the matter, is it? I thank you all for your support and keep it coming. The appointments are just the beginning, I am aware of that and I have taken everyone's advice and started back on my meds. I figure if there is bad news, I am going to need all the strength I can muster to overcome whatever it may be.

I have had this disease for approximately 26 years. There was no test for it when I was first infected. I started antiviral treatment in February 1992 and have lost most of the sensation in my lower extremities and other parts of my body from the neurotoxic class. I don't know anyone else who has lived as long as I have unless they were undetectable. Unfortunately I have never been undetectable. I just started a six drug regimen and a bit concerned about whether my liver and kidneys will hold up.

I am inclined to agree with the other commentators about not stopping the drugs. However, I would also not listen to everything clinicians tell you as well. If you stop the drugs, you may never be able to use them again. That is hiv. You have a one shot chance of going undetectable and if you don't go undetectable you will develop class resistance.

There are things you can do to help your liver. There are published papers that recommend adding one teaspoon of ground milk thistle seeds with your evening meal. This is not the preground milk thistle you buy in the store. You need to buy a bag of unground milke thisle. Milk Thistle seeds are commonly used in the hindu cooking and were used by early americans on their quest west. Another thing you can do is add 1-2 teaspoons of L-glutamine powder on an empty stomach. There are also published reports on this.

If all else fails, and your liver croaks, one of the hospitals in England has been doing liver regeneration studies and they have a 60% success rate for people with liver failure. If you get desperate and need more info, ICQ me at ICQ 118179171 in invisible mode. You need to find out what the liver cyst is from.

After 26 years, the only drugs I would caution you about is the neurotoxic class. You should avoid DDI, D4T or DDC unless it is the only option available to you. Although not as toxic and commonly prescribed, 3TC and FTC can also cause problems. I wouldn't quit taking your drugs yet. If your doctor doesn't have an appointment slot available, you should march into their office and demand to be seen.

There is no question that the drugs are a problem for all of us, but I come from a generation when people commonly died within 6-9 months after being diagnosed. For all the hell the drugs cause, they are definitely better than not taking them at all.

Drink lots of water during the day, avoid alcohol (more than 1/4 cup of wine) once a week. Try and get as much sleep as possible; this means going to bed at 9am and getting up with the chickens. The best thing you can do is to get active and involved with others and try and change the political situation.

I have multi-class resistance. I am on the last regimen available to me. I am taking Abacavir, Viread, Duranavir, TMC 125, Norvir, and Raltegravir. I can't take 3tc or any of the neurotoxic drugs. Don't stop your drugs without getting more information. When seeking a provider, check to see that your provider is dual board certified with both an Infectious Disease Credential and also a credential from the hiv association. My experience with clinicians is that those who seek extra credentials have a tendancy to be more qualified. Another thing to look for is someone that has mainly hiv patients and a lot of experience and hopefully patience to work with you. I empathize with you, but have some faith

Rita Reports used to be a good source of information, but they changed their format in February and I no longer like their newsletter. That is one of the reasons I am logged on to here tonight.

Feel free to contact me if I can be of any help. ICQ 1181791717 (invisible mode)

Forgive me for the late reply. I'm sorry to hear about all of the shit that's on your shoulders now. I agree with the others here, please don't stop your meds. If your defenses are down you don't need to add to it by not adhering.

Its a good sign that you can see a doc this week, usually you have to wait forever to see a specialist.

Wow, what a post by ZCorker. Well, it sounds like you know your stuff, Z but a lot of what you said went right over my head. I am not familiar with the classes of drugs and what not. I just know what I take and how I am suppose to take them. I did start back on my meds like a good little Queen. I am hoping my liver will not give out on me but if it did, it's not likely I make it to England.

I really don't drink much at all. It is in spells and usually consists of nothing more than a glass or two of wine. If it is beer then one of those usually with a shot of tequila. But it not often that I drink. You must be doing something right since you are still here after 26 years of living with your virus. Congrats on that. I haven't had ICQ in years but am available on Yahoo.

And Betty, you are on point as always. Cindy, yeah, I appreciate the quick dates with specialists because I am feeling like time is of the essence here. I just hope if they both want to do biopsies that they can do them at the same time. It would be easier for me and I mos definitely want to be sleep for the procedure.

Not really much to report. It would seem that I have some type of thickness on the lining of my intestinal wall and a shadow of something. They are not sure what to make of either from the cat scan. So now I am scheduled or will be for next week to get 2 sonograms done, one of my liver and the other of my gallbladder. I also have to have a colonoscopy done on June 5th. If you want the details of the visit then I suggest you check out my blog(shameless plug). But I did have a bit of fun with the intern who was cute in a Jewish boy sort of way.